Mom, Empty Nester, RRP, Christ Follower, Friend, Food Lover

Kill The Paps-Episode One

This will be the first entry in the series that will follow my journey in the use of systemic Bevacizumab (Avastin). I hope to mix the science with some humor and maybe even a dash or two of joy/hope.

While I breathe, I hope.

Episode One.

One of the first pharmaceutical treatment ideas that was discussed after my lack of response in the NIH trial was pursuing systemic use of Bevacizumab What is Avastin? Now, you are likely aware of the hurdles and obstacles that walked out in front of my bus..primarily that of insurance approval, followed by the amount of work that I, as a patient, was having to invest into the idea. Off-label, especially with no clinical trial data, is a hurdle most insurance carriers simply don’t want to be part of-evidence based medicine is the name of the insurance game. With a few papers on limited use as the only “pay for this” ammunition, it’s been an uphill battle while also wearing a fifty pound backpack. (Which basically is the same as a “sloth.”

Fast forward to this past week. Background on most recent surgery-my tracheal disease is in high gear.

December 2017 Tracheal Disease

I’ve wanted to go down this therapy road for months now, so to see the disease in such an aggressive phase, as well as the pulmonary involvement, I became even more determined to make this happen. Emory has an outstanding RRP practice. What I learned this week is that they also have an outstanding Head/Neck Oncologist. Dr. Saba believes in this idea. He agrees with this option for my case. I’ll be his second RRP patient on this protocol. The ball started rolling and in warp speed….a schedule is set, pending a stable CT scan. I’m more important than the insurance hoop….they will get me over that hoop-not my burden. We have a plan. The plan is in place and I have one job-show up. No hours spent working for approval, no hours spent digging for every shred of evidence I can find in how this treatment has worked in several RRP patients….my only concern is making sure I am ready for infusion day and following my “to do” list. (Well, and staying away from Dr. Google on side-effects, possible complications-little information is available on side-effects, complications in the use of Avastin as a stand alone treatment.)

There’s anxiety over what to expect, as we all react in such an individualized way to any medication, but especially those used in the oncology field. Will I be as sensitive to this drug as I was to Avelumab? Avastin is a VEGF VEGF How It Works, while Avelumab was an immunotherapy (PDL-1 inhibitor How Do PDL-1 Inhibitors Work). There’s anxiety over my pitiful veins holding up, but a port is something we want to avoid due to increased infection risk. (Ha, well, maybe the anxiety is over the IV in general….I loathe those little creatures.) A prayer for urine proteins to stay normal, blood pressure to not spike, and for no bleeding issues to arise! (We do know that my Benadryl push needs to be diluted and slow, so that’s one less issue to worry about on infusion days! Also, am I the only person on the planet that drug doesn’t render comatose?)

So, there you have it…..scan, three infusions, scan, if regression-repeat and then work into a maintenance routine.

While on Avastin, there will not be any OR procedures. Hopefully, this will allow a long period of maintenance, a much needed break from the OR, a break from this chronic cough, and will work to prevent anything from converting. Will it kill the virus? No. Will it hopefully give me some relief until science catches up to the mechanism of the virus-hopefully.

I’ve included links to the few papers we have available on systemic use of Bevacizumab (Avastin) for those with aggressive tracheal/pulmonary RRP that may be interested.